Pour la version française de cette publication, cliquez ici.
2020 hasn’t been an easy year for many. For most people, 2020 represents the pandemic, loneliness and restraint. For us (Carl, Maxandre, Adélie and I), 2020 represents the first year without our little Zackaël. We have no memory with Zackaël in 2020.
In 2020, it was only in my dreams that I could see my Zackaël doing new things. I dream of him almost every other night. Last night, I dreamed that he was on a school bus, happy as always. In the dream, I knew he was gone, but I had the opportunity to go and see him anyway. I had to go through the small window of the bus to reach him.
Dreams are a topic that I will cover in more depth at some point in this blog. I don’t dream of him during the day. When I think of him, they are not dreams, but memories.
On December 24, I was preparing little treats for the kids’ stockings. My heart really ached when I realized Zackaël’s will be left empty (no treats). I started to cry. I then decided to write him a little note to put it in his stocking. It is gestures like this that I must do to go on, to help cope with my sorrow. Each year, I will insert a little note for my little angel.
In November, I was shopping for clothes so that we could all wear green for Christmas. Green being Zackaël’s favorite color, I wanted our family photo to reflect that Zackaël is among us. It wasn’t easy to find, but after a few hours of searching online, I had found some nice green outfits for all of us. For Maxandre, I even ordered two shirts, one for this year and a bigger one (the same) for future years!
For Adélie, the green and black dress (see below) was given to us by friend from Zackaël’s class, a dress that belonged to little Lillian. Thank you Shauna (Lillian’s mom) for this beautiful green dress!
We wish you all health and happiness for 2021. May 2021 be a better year for everyone!
If you enjoyed this post, please enter your email and click “Follow” to know once my next post is out!
Since Zackael’s death, Carl and I have been particularly touched when we hear other tragic stories, especially when we hear about other children dying too young. We, unfortunately, understand the pain and emptiness those bereaved parents feel all too well.
December 13 was Worldwide Candle Lighting Day in memory of the children who left us too early. It is believed to be the largest mass candle lighting on the globe. At 7 pm, people all around the world lit candles for the children gone too soon. I personally lit a green candle in honor of my Zackaël. The other candle, I lit it for all the other children who have left us. I thought of little Laurence, daughter of my cousin Sophie, and sweet Genevieve, Carl’s cousin.
I will always have in my heart all the children who are no longer with us, as well as their parents. Some parents have lost 2 or 3 children in a road accident, it is so cruel and unfair. They are the strongest parents I know.
I think of Clare McBride who lost her two daughters in an accident, caused by a drunk driver who didn’t do his stop. Here is a picture of little Oksana (6 years old) and Quinn (4 years old).
I didn’t know that Clare also has her own blog. Clare just shared it with me, I recommend you read it. Here is an excerpt of a poignant letter she wrote to the driver. It begins with:
“Dear Joe *, On August 16th 2019 you killed both of my children, Lucy *, 6, and Betty *, 4.”
It is important to keep talking about our children, even though they are physically no longer here. Often, friends and relatives mistakenly believe that it is best to avoid mentioning the deceased child in the presence of the bereaved parent. They believe that if they talk about them, it may bring grief to the parent. It is quite the opposite. Most bereaved parents want people to keep talking about their child who left us too soon. In fact, the worst thing to do is ignore that they existed, and ignore their grief and loss. This can actually cause the grieving parent more pain.
I will always continue to talk about Zackaël. Most people didn’t have a chance to get to know Zackaël, but I can make him known to others. Today, I am sharing a story about him, and I will continue to share some from time to time.
Zackaël’s School Photos
In October 2019, a few weeks before the accident, we received some proofs of Zackaël’s school pictures. Looking at the pictures, I quickly said to Zackaël something like, “You look cute, but you’re laughing a little too much, we can’t see your beautiful eyes. Maybe for the next photo… you could smile just a little less”. This whole conversation was very quick, as it probably was interrupted.
A few weeks later, on October 23, I picked up the kids from school after work. Zackaël immediately told me that there was a re-shoot that day and assured me that he hadn’t smiled too much. I told Zackaël that I didn’t know the re-takes were that day, I was a little disappointed because I would have dressed him better. He was wearing heavily used jogging pants and a Star Wars t-shirt. I also asked him if his smile was smaller than the last time. He said “yes”. It surprised me that he remembered because I had only told him once and it had been about twenty days since that conversation.
Fast-forward to the beginning of November, I received the new proofs of Zackaël’s photos. These photos made me laugh so much. Zackaël had really paid attention to what I had told him at the beginning of October, but maybe a little too much! He had remembered not to smile too much in the next few photos … so here is the result below! The photos are so different, it’s so funny when we compare them to each other!
Zackaël was always a good listener. When you told him something, he paid attention and remembered. He was very observant. Even though these photos didn’t showcase his beautiful smile that would highlight his beautiful eyes, I still love these two photos. They demonstrate how cute he was, whether he was grinning from ear to ear, or looking very serious. They demonstrate how attentive he was when I spoke to him. And above all, these photos represent a memory that I hold dear in my heart, only a few weeks before he left us. I love you Zackaël.
That’s it for now! I hope you’ve enjoyed the memory I shared about Zackaël. Please share your thoughts in the comments below. I appreciate them so much! Feel free to leave messages to the other bereaved parents too.
If you enjoyed this post, please enter your email and click “Follow” to know once my next post is out!
This week’s post is about mourning as a bereaved mom, a more sensitive topic. I would therefore recommend that you might want to be in a certain mood to read this post. Although it’s not an easy topic, I think it’s important for people to understand how we feel in mourning. So I encourage you to read it at some point, even if it’s not right away. It can help to better understand those who are grieving, and therefore, to better support them. Thanks for reading.
Yesterday I had an urge to draw my heart. My heart is full of all kinds of emotions, but in large part, this panoply of emotions come from two principal sources; the feeling of love and the feeling of sorrow.
The left part represents the love that reigns in my heart. As you can see in the drawing, this love is solid, intact, soft, smooth, and even shiny. This is the love I have for my family, my children. This love allows me to continue and survive. When I miss Zackaël, that part of my heart calls out to me. Love is present and I think of him. There are plenty of moments in a day when I miss Zackaël. I don’t know how many times I think about him during a day, but I can say that it’s almost all the time.
Drawing of a broken heart: “When Love and Sorrow Collide”
However, there are times when my love overpowers me; I miss him so much that I need to see more. I have to do more than talk or write about him. I have to see more than his plaque outside. I have to see more than his room which is empty. I have to see more than his photos in the living room. I need to see more than what I’m used to seeing. When we always see the same photos, you kind of become “immune” to them and the emotions and memories they represent. I am so used to seeing them that my heart has hardened over time and I am therefore able to deal with my emotions when looking at them.
But often when I suddenly want to see my sweet Zackaël, my heart is unsatisfied and wants more. So I choose to look at other photos. It is usually when looking at one or two photos that this urge appears, that is, the urge to see more. I can’t help it … I love him too much, he is too beautiful. This urge can manifest itself without even looking at pictures. I miss him so much that I have to open the computer or the phone.
At first, my heart is solid as love dominates. I want to see him, I miss him, so looking at pictures makes me feel good. This all represents the left side of my heart. I continue to look at his photos. Gradually, I become overwhelmed and need to see more. I want to hear his voice, see his movements and his smile, I am in my own world… a world where Zackaël is still with us.
By now I’m well aware of the risk associated with looking at more pictures. But I can’t stop, my heart wants more. I, therefore, keep opening more, sometimes even a video. Be careful maman Brigitte, it’s risky. Is my heart capable of it?
The two parts of my heart are now colliding, a battle of conflicting emotions. It doesn’t take long for the right part of my heart to suddenly take over. Sadness comes in full force, it is stronger and overpowers the love. We are now on the right side of my drawing.
My love has been converted into sadness. In my drawing, we can even see a (subtle) arrow in the middle which denotes this conversion. I would even say that my love was crushed by sadness. Once again, the sorrow has surfaced and I burst into tears. It’s the victory of sorrow, it has beaten love. I feel defeated. My heart hurts. There was already a big hole in my heart and lots of broken pieces, but now my heart is bleeding. I have to stop looking at the pictures, I can’t take it anymore.
This is an excerpt from my journal (dated April 2020) that describes how I feel when this happens. My journal is in French, but basically, I’m saying how torn I feel and how painful it can be when I decide to look at a video.
This conflict has been persisting for a year. Either I miss Zackaël and therefore want to see him, or I “see” him and cry my heart out. It is very paradoxical. My heart is never intact, there is always a hole, and on either side the two emotions collide. This is the heart of a bereaved parent … at least my heart as a bereaved mother. I hope this heart (my heart) will transform. I hope the black on the right side starts to fade. I hope the cracks will repair. I hope it can be even and completely smooth and shiny. I hope it will soon stop bleeding so much.
That’s it for now. Thank you to have read this post. If you’ve lost someone special in the past, was it hard for you to look at several pictures at a time?
Please share your thoughts in the comments below. If you enjoyed this post, please enter your email and click “Follow” to know once my next post is out!
La blessure d’Adélie est un sujet qui m’a longtemps été malaisant, plus particulièrement lorsque nous étions encore à l’hôpital et obtenions des nouvelles de l’équipe médicale en neurologie. Ayant déjà perdu mon petit Zackaël et souffrant d’un profond deuil et d’une dépression, j’avais du mal à me tenir debout lorsque nous discussions de résultats (tel ceux d’un IRM) au sujet du cerveau d’Adélie. Dans cette publication, je n’irai pas en détails sur sa blessure. En fait, je ne possède pas les informations particulières de sa blessure. Cette publication se portera plutôt sur un type de thérapie que nous entreprenons avec Adélie.
Notre petite Adélie a subi une blessure grave au cerveau. Elle a été frappée par l’orignal du côté gauche de son cerveau ce qui a malheureusement provoqué une lésion permanente. Dans ma publication précédente Mise à jour d’Adélie, je parle un peu de certains handicaps qu’Adélie, plus précisément du côté droit.
Hémiparésie: un déficit causé par des lésions cérébrales ou de la moelle épinière qui engendre une paralysie partielle ou une faiblesse d’un côté du corps. Elle provoque des problèmes de force musculaire, de contrôle musculaire ainsi qu’une raideur musculaire dans les capacités de mouvements.
Pour Adélie, le dommage du côté gauche de son cerveau a entraîné une hémiparésie de ses membres droits. Adélie n’utilisait ni sa main droite ni son bras droit, et utilisait le côté gauche pour tout. Heureusement, son jeune âge est en sa faveur (2 ans au moment de l’accident). Le tissu cérébral détruit ne peut pas retrouver sa fonctionnalité, mais d’autres parties de son cerveau peuvent prendre en charge certaines des responsabilités de la zone détruite. La rééducation est donc importante afin de faciliter ce processus d’apprentissage.
Au début des années 1990, une étude sur des singes, supervisée par le neuroscientifique Edward Taud, a fait des percées majeures dans le domaine de la neuroplasticité. Il a découvert et développé la thérapie par contrainte induite du mouvement (TCIM). Cette thérapie aide les personnes souffrant d’hémiparésie une rééducation du bras et de la main de leur côté paralysé.
Dans l’étude, les membres « forts » des singes ont été immobilisés, les membres qui n’avaient pas été affectés par une blessure. Pour fonctionner, les singes étaient donc maintenant forcés d’utiliser leurs membres atteints, c’est-à-dire leur côté le plus faible. Beaucoup auraient pensé que ceci aurait laissé les singes impuissants. À la grande surprise de plusieurs, les singes ont tous peu-à-peu commencé à utiliser leur côté faible pour manger, jouer et fonctionner.
Avec la TCIM, les exercices répétitifs induisent le développement de nouvelles voies neuronales dans le cerveau, et les patients réapprennent à utiliser le membre paralysé. Le raisonnement de Taub était qu’un singe n’utilisera pas le bras affaibli s’il peut se servir de son bon bras à la place. Cet apprentissage de «non-utilisation» conduit à une détérioration supplémentaire. Cependant, si les deux bras sont faibles, il sera obligé de les utiliser. Cela peut sembler paradoxal, mais l’hypothèse a été confirmée par les expériences.
La TCIM s’avérer bénéfique chez les patients qui ont subi l’une des conditions suivantes :
Accident vasculaire cérébral (AVC)
traumatisme crânien (ex. Adélie)
Sclérose en plaques
Lésion de la moelle épinière
Autres conditions neurologiques
Les patients atteints d’hémiparésie seront souvent découragés d’utiliser les membres affectés en raison de la difficulté qu’ils rencontrent. Nous avons vécu cela avec Adélie, elle aussi semblait involontairement développer un « apprentissage de non-utilisation ». L’apprentissage de « non-utilisation » peut notamment entraîner une détérioration supplémentaire de ses membres inactifs. C’était facile pour elle d’utiliser sa main gauche, mais extrêmement difficile pour elle de même lever sa main droite. Pendant une longue période, sa main droite était complètement serrée et elle semblait même ignorer que sa main droite existait. Pendant son séjour à l’hôpital, en plus de la physiothérapie, Carl et moi lui faisions des étirements de sa main plusieurs fois par jour. Sa main droite était souvent froide et bleuâtre en raison de l’absence de circulation.
Nous avons finalement commencé à voir des signes qu’elle était consciente de sa main droite seulement des mois après l’accident.
La TCIM nous a été suggérée pour Adélie. Nous nous sommes dit qu’Adélie serait prête pour la TCIM une fois qu’elle ait réappris à marcher. Par contre, Covid et les annulations de ses thérapies ont fait en sorte qu’il fallait reporter l’essai de la TCIM. C’est donc en octobre 2020 que nous avons pu finalement aller de l’avant avec cette thérapie.
Nous avions l’option entre un plâtre permanent ou amovible. Nous avons opté pour le plâtre permanent puisque nous savons à quel point notre petite Adélie peut être déterminée. Il serait difficile pour nous de l’enlever et de le remettre si elle ne coopère pas. Avec un permanent, nous n’avons pas le choix, nous ne pouvons pas l’enlever, elle l’aura 100% du temps.
Le 6 octobre, le bras gauche d’Adélie (« son côté fort ») a été complètement plâtré jusqu’au bout de ses doigts pour la forcer à utiliser son côté droit, son « côté faible ». Pendant ce temps, elle ne pouvait utiliser que la main droite qui a donc été utilisée de manière intensive, main qui normalement est peu utilisée par Adélie.
La TCIM a été plus difficile les premiers jours, surtout le soir au coucher. Adélie pleurait et me suppliait de l’enlever, « enlève » pleurait-elle. C’était inconfortable pour elle et il faut se rappeler que sa main droite était très limitée dans ce qu’elle pouvait faire. Nous devions ainsi être là pour l’aider davantage et la réconforter en lui disait qu’on ne pouvait pas l’enlever.
Adélie s’est habituée assez vite. Elle est une vraie championne. Malheureusement durant le temps de sa thérapie, elle a attrapé une infection urinaire avec une bactérie très résistante. Ceci a fait en sorte qu’elle ne se sentait pas bien (fièvre, manque d’énergie, etc), donc nous avons décidé d’arrêter la thérapie après 18 jours. C’était seulement quelques jours d’avance, nous voulions environ 3 semaines de TCIM.
Nous planifions une autre TCIM à la mi-janvier. La thérapie sera répétée probablement quelques fois par année. À ce stade, nous ne savons pas si la main et le bras d’Adélie pourront revenir à la normale. La TCIM est encore une thérapie qui est récente et fait donc l’objet de plusieurs études.
Pour Adélie, la réhabilitation se continuera pendant plusieurs années. Nous sommes confiants que son petit cerveau ira chercher des neurones de quelque part d’autre pour compenser celles détruites de son côté gauche de son cerveau.
On continuera toujours de travailler fort avec Adélie. En fait, la semaine passée, nous avons reçu de la rétroaction très positive de la part de ses thérapeutes et des éducatrices de la garderie. Nous remarquons tous une grande amélioration de ses membres droits. Elle utilise de plus en plus sa main droite pour les activités qu’elle fait. Bravo Adélie, nous somme fiers de toi!
C’est tout pour l’instant!
S.v.p. partager vos réflexions dans les commentaires au bas de la page. Si vous avez apprécié cette publication, vous pouvez vous abonner en inscrivant votre courriel et cliquer «Follow» pour recevoir les prochaines!
Adélie’s injury has long been an uneasy subject for me, especially when we were still in the hospital hearing details about her injury and recovery from her neurological team. Having already lost my little Zackaël and suffering a deep depression, I found it difficult to stand up when discussing results (such as an MRI) about Adélie’s brain. The main subject of this post isn’t about the details of her injury, in fact I don’t even have all of those details. Instead, I will discuss a type of therapy we are undertaking with Adélie.
Our little Adélie suffered a traumatic brain injury (TBI) when the moose impacted on the left side of her head, which unfortunately resulted in permanent damage. In a previous post, Adélie’s Update, I talked a bit about some of Adélie’s disabilities, specifically on the right side.
Hemiparesis: a condition caused by brain damage or spinal cord injury that leads to partial paralysis or weakness on one side of the body. It causes weakness, problems with muscle control, and muscle stiffness.
For Adélie, the damage to the left side of her brain resulted in hemiparesis of her right limbs. As she began her recovery, Adélie used neither her right hand nor her right arm, instead using the left side for everything. Fortunately, her young age works in her favour (she was 2 at the time of the accident). The damaged brain tissue cannot regain its functionality, but other parts of her brain may take over some of the responsibilities of the damaged area. Rehabilitation is therefore important in order to facilitate this learning process.
In the early 1990s, a study involving monkeys, supervised by a neuroscientist Edward Taud, made major breakthroughs in the area of neuroplasticity. He discovered and developed the constraint-induced movement therapy (CIMT) which helps people who have developed a “learned non-use” as a result of a neurological injury. CIMT is used to help people suffering from hemiparesis to retrain the arm and hand of the paralyzed side of their body.
In the study, the scientists immobilized (restrained) the monkeys’ stronger limbs, which many would have thought would leave the monkeys helpless. The monkeys were therefore forced to use their affected limbs, their “weaker side”. To the surprise of many, the monkeys gradually all started using their weaker side to eat, play and function.
With CIMT, the repetitive exercises induce the development of new neural pathways in the brain, and the patients learn to use the paralyzed limb again. Taub’s reasoning was that a monkey will not use the weak arm if it can rely on its good arm instead. If both arms are weakened, however, it will be forced to use them. This might seem paradoxical, but the hypothesis was confirmed by the experiments.
CIMT might be beneficial for patients who encountered the following conditions:
Traumatic Brain Injury (ex. Adélie)
Spinal Cord Injury
Other neurological conditions
Patients with Hemiparesis will often be discouraged from using the affected limbs because of the difficulty they encounter. We experienced this with Adélie, she was involuntarily starting to develop this “learned non-use” which can actually lead to further deterioration of her unused limb. It was so easy for her to use her left hand, but extremely hard for her to even lift her right hand. For a long period of time, her right hand used to be completely clenched and she seemed unaware that her right hand even existed. During her hospital stay, in addition to the physio, Carl and I would stretch her hand several times per day. Her right hand would often be cold and blueish from no circulation. We finally began to see signs of her being aware of her right hand months after the accident.
We had the option of a permanent or removable cast. We opted for the permanent cast since we know how determined our little Adélie can be. It would be difficult for us to take it off and put it back on if she didn’t cooperate. With a permanent one, we have no choice, it cannot be taken off and it will be on her 100% of the time.
On October 6, Adélie’s left arm (“her strong side”) was completely cast all the way down to her fingertips to force her to use her right side, her “weak side”. The right hand was thus used intensively, after having been barely used at all by Adélie for almost a year since the accident.
CIMT was difficult during the first few days, especially at bedtime. Adélie was crying and begging me to take her off the cast, “enlève” she cried. It was uncomfortable for her. She would get frustrated because her right hand was very limited in what it could do. We therefore had to help her more and comfort her while explaining that it couldn’t be removed.
Adélie got used to it pretty quickly. She is a true champion. Unfortunately, during the time of her therapy, she contracted a urinary tract infection from a very resistant bacteria. This made her feel unwell (fever, lack of energy, etc), so we decided to stop the therapy after 18 days, only a few days shy of our planned 3 weeks of CIMT.
We are planning another CIMT in mid-January. The therapy will probably be repeated a few times a year. At this point, we don’t know if Adélie’s hand and arm will ever be able to return to normal. CIMT is still a therapy which is recent and is still the subject of several ongoing studies.
For Adélie, the rehabilitation will continue for several years. She has made so much amazing progress already, in all aspects of her life, and we’re confident that her little brain will continue to rewire and pick up neurons from elsewhere to make up for those damaged on her left side of her brain
We will always continue to work hard with Adélie. In fact, over the past week we have received lots of positive feedback from his therapists and educators at the daycare. We all noticed impressive improvement in her right-side limbs. She is using her right hand more and more for the activities she does. Bravo Adélie, we are proud of you!
That’s it for now!
Please share your thoughts in the comments below. If you enjoyed this post, please enter your email and click “Follow” to know once my next post is out!
Aujourd’hui c’est la fête à Maxandre! Mon grand garçon a 10 ans!
Je suis extrêmement fière de lui. Beaucoup des gens disent que l’année 2020 est la pire des années à cause de la COVID. Mais pour Maxandre, c’est sa première année sans son frère, sans son meilleur ami. Le confinement, ce n’est rien à côté de tout le reste. Chaque jour, il doit passer au travers le trauma, l’accident, la perte de son frère et le souci envers sa soeur (un souci qui perdure encore pour lui). Saviez-vous que le deuil d’un frère (ou soeur) est un type de deuil qui est souvent le plus négligé? C’est un sujet que je parlerai à un moment donné dans ce blogue.
Malgré toutes les difficultés et les défis, Maxandre continue de faire de son mieux et il réussit bien à l’école. Bravo Maxandre!
N’hésitez pas à lui envoyer un message de bonne fête en commentaires ci-dessous.
N’oubliez-pas de vous inscrire en cliquant “Follow” avec votre courriel pour recevoir les nouvelles publications!
Today is Maxandre’s birthday! My big boy is turning 10!
I am extremely proud of him. Many people say that 2020 is the worst year because of COVID. But for Maxandre, it’s his first year without his brother, without his best friend. Social distancing is nothing compared to everything else. Every day he must go through the trauma, the accident, the loss of his brother and the worry for his sister (that still exists for him). Did you know that the loss of sibling might be the type of grief that is often the most neglected? Sibling grief is a topic that I would live to cover at at some point in this blog.
Despite all the difficulties and challenges, Maxandre continues to do his best and is doing well in school. Well done Maxandre!
Feel free to send him a happy birthday message in the comments below.
Don’t forget to click “Follow” and enter your email to receive the new posts!